The aim of this study was to determine the efficacy of the Prevent-Teach-Reinforce for Young Children (PTR-YC) as implemented within public early behavioral intervention (EBI) for children with autism or intellectual disability. Several adjustments to the research design and to training and intervention protocols were made in response to organizational constraints, the COVID-19 several waves and families’ needs within this real-world intervention context. EBI educators were trained in the PTR-YC program, which they then applied with the parents of a child in their caseload who presented challenging behavior. Parent-practitioner intervention teams were divided in two cohorts according to their readiness to apply the program. Parents evaluated their chid’s challenging behavior, their parenting stress levels, caregiving strain, and sense of competence, as well as their family’s quality of life before and after program application, as well as the acceptability of the program after its application. Frequency of children’s aggressive behavior, decreased significantly after program application, but not self-injurious, stereotyped or overall challenging behavior. Parents’ feelings of strain and parental stress also decreased after the program, while family quality of life had improved. The program did not change parents’ sense of competence. Parents rated the PTR-YC as generally acceptable. As implemented within this real-world context of public EBI services, the PTR-YC program has shown promising results on child, parent, and family outcomes.

Data on the presentation of behavioral and emotional problems in early childhood and their evolution over time through large, longitudinal cohort studies remain scarce, which limits the current state of knowledge on how to guide early childhood interventions. This study aimed to develop a better understanding of behavior problems in young children with developmental disabilities, of how these change over time, and of associated child and family characteristics. This longitudinal study on 958 families addressed several shortcomings of the literature by adopting an instrument specifically developed to measure behavioral and emotional problems in children with developmental disabilities, the Developmental Behavior Checklist (Einfeld et al. in Manual for the developmental behaviour checklist: Primary carer version (DBC-P) and teacher version (DBC-T), Monash University, 2002), by employing consistent data collection intervals (i.e., after the diagnosis and at two annual follow-ups), and by sampling a homogeneous age group (i.e., 18–59 months at the time of diagnosis). Children’s emotional and behavioral problems, adaptive behavior, intellectual functioning, and autism symptoms, as well as parenting stress and family quality of life were assessed. Overall, social and communication problems tended to decrease, while externalizing behavior problems tended to increase and internalizing behaviors remained stable over time. Cluster analysis yielded four subgroups based on behavioral and emotional problems as assessed at the time of diagnosis. These subgroups differed in child’s gender and diagnostic labels and on other child and family characteristics. Patterns of change in behavioral and emotional problems significantly differed over time according group membership. Co-occuring conditions, such as emotional and behavioral problems, should be considered in planning interventions.

Abstract Background Parents of children diagnosed with cancer face significant psychosocial challenges, yet their needs often remain insufficiently addressed within existing services networks. Few interventions documented their clear theoretical foundations or mechanisms of action, limiting understanding of how specific components lead to meaningful outcomes, particularly those valued by parents themselves. To address these gaps, a community-based participatory research initiative was launched by a community paediatric cancer association in collaboration with academic researchers. The current article focuses on co-developing an intervention model to support the well-being of parents whose child has recently received a cancer diagnosis. Methods Using an iterative modified Delphi process (series of questionnaires and focus groups), we engaged parents and clinicians to document their perspectives on the essential components of a parent-focused psychosocial intervention. Twenty-one participants (14 parents, 7 clinicians) contributed to this phase of the larger initiative. The mixed-methods data provided quantitative data analyzed using descriptive statistics and qualitative data analyzed using thematic analysis. Results This collaborative process led to the development of “Me for Us,” a structured parental group intervention. This manualized, eight-session program was designed to enhance parents’ psychological well-being and their capacity to support their child and family. Conclusions Grounded in principles of Acceptance and Commitment Therapy, “Me for Us” focuses on informational resources, self-care strategies, emotional regulation, peer support, and parent–child relationships. Key mechanisms such as small size group, co-facilitation by a mental health professional, and including a parent-partner with lived experiences are discussed.

PURPOSES:Growing up with a sibling who has a developmental disability (DD) is a complex experience that becomes even more challenging in the presence of severe challenging behaviors (SCBs). SCBs include behaviors that may endanger the physical and psychological integrity of both the individual and their close environment. Despite increasing research on parental experiences, the perspectives of brothers and sisters remain largely overlooked. These conditions often expose them to prolonged and repeated interpersonal harm, aligning with the context described in complex trauma theory which outlines symptoms that may arise from such environments across seven domains: affect regulation, interpersonal relationships, self-concept, cognition, behavior control, physical symptoms, and dissociation. This study aims to gain a deeper understanding of the lived experiences of individuals who grew up with a sibling with an DD in the context of SCBs, using complex trauma theory as a framework. METHODS:Eleven participants took part in two semi-structured interviews exploring both their childhood and adult lives. A directed content analysis, based on the domains of complex trauma theory, was conducted on the full interview transcripts. RESULTS:Findings indicate that the context described by participants shares many features with environments characterized by complex trauma. Furthermore, all seven symptom domains outlined by the theory were reflected in their narratives. CONCLUSION:These findings underscore the need to recognize the potentially traumatic nature of growing up in such environments and to approach brothers' and sisters' experiences through a trauma-informed lens. Greater awareness of their reality is essential to developing clinical interventions.

BackgroundThis paper presents the participative research undertaken to adapt and pilot the Early Positive Approaches to Support (E-PAtS) program, originally developed and evaluated in English for use in the United-Kingdom, for implementation within Québec’s public health and social services. E-PAtS supports family carers of young children with developmental disabilities by promoting their well-being and adjustment early in their services trajectory.MethodThe program was translated into French and iteratively adapted based on feedback from six pilot cohorts conducted across four diverse clinical settings: a rural service center, an urban center, a specialized pediatric hospital, and a diagnostic clinic. These sites were selected to ensure demographic and geographic representativity of Québec’s population, and participating families also reflected a range of backgrounds. The adaptation process was grounded in community-based participatory research principles, actively involving parents, practitioners, managers, and researchers. Changes to the program’s content and delivery were made according to partner recommendations. Evaluation focused on social validity, effectiveness, feasibility, and fidelity of implementation.ResultsParticipating parents completed questionnaires and interviews, reporting improved well-being and greater confidence in self-care, indicating the program’s relevance and positive impact. Fidelity of implementation was assessed using the E-PAtS fidelity checklist, and feasibility was evaluated through session attendance logs. Both indicators were considered strong, despite the challenges posed by the COVID-19 pandemic.ConclusionFindings support the adapted E-PAtS program’s suitability for Québec’s public services, with further refinements recommended for broader dissemination. This study highlights the value of participatory approaches in adapting evidence-based interventions across cultural and service delivery contexts.

ObjectivesVery few studies have documented the attitudes of bus drivers who play an important role in encouraging people with intellectual disabilities (ID) to use public transport. The objectives of this study were to measure bus drivers' attitudes toward people with ID, to document the related variables and to compare the attitudes of the drivers to the general publics.MethodsTwo questionnaires (ATTID and Q-Bus Drivers) were administered to 269 bus drivers to document their attitudes.ResultsThe results of the ATTID show that the most positive attitudes were identified on the Discomfort factor while the least positive were found on the Sensitivity/Tenderness factor. These attitudes differed from those of the general public. The quality of relationships was the variable most strongly associated with attitudes. The ATTID's results were corroborated by the Q-Bus Drivers questionnaire, which also revealed the presence of paternalistic and infantilizing attitudes.ConclusionsTraining and awareness-raising activities involving both bus drivers and people with ID could improve the former's attitudes. Other studies are needed to document bus drivers' attitudes and evaluate the impact of interventions targeting their attitudes. Such interventions may ultimately foster the use of public transport by people with ID and their social inclusion.

The present study examined barriers and facilitators to the implementation of evidence-based practices to manage challenging behavior under real-world conditions within community-based autism services. Parents, early intervention practitioners, and administrators at a public agency who participated in Prevent-Teach-Reinforce for Young Children (PTR-YC), an intervention based on positive behavior support principles, shared their perspectives on the factors that helped or hindered the implementation of the program. Barriers and facilitators were identified at the macrosystemic (community), services (organization and program), and case (parent, family, child, practitioner) levels. Of note, the governmental response and lockdown measures of the Covid-19 pandemic highlighted both challenges and opportunities for the planned large-scale deployment of the intervention. While the program itself includes built-in facilitating elements (e.g., peer support, flexibility, efficiency), results also underscored the importance of robust change management practices, administrative support, responsive clinical supervision, and organizational commitment to professional development. Parents and practitioners, the core members of the intervention team, bring to bear many positive personal qualities but benefit from support in adopting the new approach and its procedures.

Background A collaborative initiative was undertaken to restructure diagnostic and support services for developmental disabilities (DD) in young children in the province of Québec. Representatives from multiple stakeholder groups, including researchers, parents, and clinicians, shared insights based on their experiences with diagnostic evaluation services. Aims The present study documented stakeholders’ experiences with existing DD services, with a focus on identifying barriers, facilitators, and gathering actionable recommendations for the creation of a new model for diagnostic evaluation. Method Twenty-nine stakeholders shared their experiences in focus group and individual interviews. Their discourse was analyzed according to the quality determinants of the ETAP framework (Rivard et al., 2020) and categorized as barriers, facilitators, or recommendations. Results Stakeholders described several barriers related to continuity and accessibility within the current system but also discussed some facilitators that promoted, e.g., the accessibility and validity of services. They made several recommendations to improve upon or clarify existing elements and identified what could be added. Conclusions These testimonials from stakeholders emphasize the need to conceptualize the DD service trajectory as a whole. This will require improving upon information-sharing and collaboration practices, formalizing procedures, and adding case navigation and parent support modalities.

Receiving an autism diagnosis is characterized by substantial life changes for families, as they must learn to orient healthcare systems and make considerable adaptations to their daily routine. Greater insight is needed on mothers’ and fathers’ psychological adjustment and co-parenting, to be able to offer appropriate supports and services to families. This study explored stress, adaptation, and co-parenting through semi-structured interviews with twenty parents (15 mothers and 5 fathers) of a child diagnosed with autism. Thematic content analyses revealed that parents had different ways of coping with stress and adjusting to their child’s diagnosis, both individually and as a couple. They shared ways in which their parenting relationship helped them adapt, as well as facilitators and barriers to their well-being. The findings portray that both mothers and fathers require support when raising a child with autism. Implications for interventions for the whole family system (child, parents, and couple) are discussed.

BACKGROUND:Family carers often lack support for their own well-being as they navigate diagnostic and early intervention services for intellectual and developmental disabilities. METHODS:This study explored the emotional journey of carers during Early Positive Approaches to Support, an 8-week group program. Participants journaled their emotional experiences at the beginning and end of each session. RESULTS:There was a significant increase in comfortable emotions and a decrease in uncomfortable emotions by the program's end. CONCLUSIONS:These findings suggest that the program improved carers' ability to self-regulate their emotions and manage challenges. This study also highlights the value of self-observation to understand carers' emotional landscapes in interventions targeting their well-being.

In the field of early childhood education, the inclusion of children with special needs refers to access to classrooms and age-appropriate activities for all children, even considering developmental challenges and support needs for children diagnosed with developmental disabilities. The attitudes of education staff have been documented as one of the most influential factors in the success of inclusive education in schools. However, few studies have been conducted on the staffs' attitudes in daycare settings. The first objective of the present study aimed to document the attitudes of 211 early childhood educators and administrators of Quebec's early childhood educational settings toward inclusive education, using the Multidimensional Attitudes Toward Preschool Inclusive Education Scale (MATPIES), which measures several dimensions of attitudes. The second objective was to identify associated factors of staffs' attitudes that influence those attitudes. Overall, participants expressed positive attitudes towards inclusive education. Educators reported significantly higher scores on positive beliefs, negative beliefs, and behavioural subscales compared to administrators. Results indicate that positive beliefs and behavioural subscales are not significantly different from one another but are both significantly higher than the affective and negative beliefs subscales. Moreover, several factors related to the participants were significantly associated with attitudes towards inclusive education.

Introduction: This participatory study aimed to document how health and social service professionals in Quebec perceive the role of the Intervenant Pivot (IP) who supports individuals with physical or intellectual disabilities or autism. Methods: A mixed-methods online survey was conducted among 884 professionals across Quebec's health and social services network. Quantitative responses were analyzed descriptively, while qualitative responses underwent structured thematic analysis. Results: Two primary functions were identified: coordination (89.9%) and support (76.5%). However, definitions and expectations of the IP role vary widely. Reported challenges include work overload, insufficient tools, and structural complexity. A majority (77%) expressed a need for training. Discussion: The findings highlight the importance of clarifying and standardizing the IP role. While a provincial training program exists, additional tools and support systems are required. Conclusion: Successful implementation of the IP role requires sustained organizational support, including training, standardized practices, and supervision.

The transition to school is challenging for families of children with autism, especially in the context of socioemotional and behavioral challenges. This study focuses on the needs of 64 parents of children with autism in Montreal during the transition from early behavioral services to school through the lens of the family needs assessment model. The research team collected data on family needs and socio-behavioral profiles at two critical periods during the school transition: the beginning and end of the first school year in kindergarten. Results indicated that the support needs expressed by parents to facilitate their child’s school transition are evolving and time-sensitive, particularly concerning children’s complex needs, education, and disability-related services, with family needs decreasing over the course of the year. The study underscores the necessity for diverse support throughout the transition period.

The way through first suspicion of developmental delays to the time a diagnosis of autism is confirmed can be a long and emotional road. Additional challenges are faced by families with an immigrant background who must learn to navigate an unfamiliar health and social service care system. The current study aims to document the variability of emotional experiences reported by parents with an immigrant background through the autism service trajectory, from the first suspicions of a developmental delay to school entry. Eighteen families participated in two semistructured interviews regarding their autism service trajectory. By using an inductive qualitative content analysis, findings revealed specific contexts in which strong emotional experiences were expressed and made it possible to identify targets for intervention at key moments to support parental psychological well-being.

Patients living with various rare or orphan diseases (ROD) experience common psychosocial difficulties. Those need emerge from a combination of factors, such as the large variety of patients and the rarity of resources, as well as concentrated efforts on physical health needs that yielded increases in life expectancy and quality in patients. A gap is therefore rising in the consideration of psychosocial needs of patients, such as coping with the impacts of physical limitations, reducing social isolation and distress. To contribute to address this gap, we developed, pilot-tested and evaluated the acceptability, feasibility, implementation, and short-term effects of Connect-ROD, an online group intervention to support adult patients with a ROD (AP-ROD), which aims to improve coping mechanisms, reinforce sense of control, and support personal goals of AP-ROD. A qualitative study comprising of in-depth pretests, post-test interviews and standardized questionnaires, was conducted with 14 participants in two consecutive intervention groups. The Connect-ROD intervention is strongly anchored in acceptance and commitment therapy as well as community psychology approaches. A pilot test allowed us to improve on the initial structure and to produce a manualized 10-week program delivered online, made up of 2-h sessions comprising formal activities, exchanges and homework. The evaluation showed satisfactory acceptability and accessibility, compliant delivery by facilitators, and promising short-term effects on personal objectives, sense of control, coping mechanisms, symptom management, acceptance of the emotions associated with the disease, distress, self-efficacy, social support and connectedness. The program did not show short-term effects on overall quality of life. It is recommended that Connect-ROD is evaluated on a larger scale. It seems promising to support various AP-ROD who live with the complex psychosocial consequences of their disease.

This paper documents an innovative research approach undertaken to co-develop an integrated assessment, diagnosis, and support service trajectory for children suspected of having a developmental disability. It employed data-driven practices and involved multiple stakeholders such as parents, professionals, managers, and researchers. It emphasized the importance of incorporating experiential knowledge adopting an integrated care and service trajectory perspective, and using an implementation science framework. The first part of this article presents the theoretical roots and the collaborative method used to co-construct the model trajectory. The second part of this article presents the results of a survey in which participating stakeholders shared their point of view on the value and impact of this approach Overall, this article provides a step-by-step operationalization of participative research in the context of public health and social services. This may help guide future initiatives to improve services for developmental disabilities in partnership with those directly concerned by these services.

BackgroundPediatric cancer is associated with stressors that increase the risk for distress across family members. Psychosocial support varies and may not meet family needs and preferences. This study investigated family members' points of view regarding psychosocial service needs, as a first step of a large participative research project aiming to develop interventions grounded in key stakeholders' perspectives.MethodsThis study documented the perceptions of 370 parents, 11 siblings, and 60 individuals who themselves had received a cancer diagnosis as a child and employed a mixed-methods design through an online survey.ResultsRespondents indicated their key concerns were coping with intense emotions, accepting their feelings toward the diagnosis, and managing the psychological burden that accompanies cancer, its treatment, and associated life changes.ConclusionThe results suggest that an intervention program should address emotion management as well as interventions focusing on the entire family system.

PurposeThe Canadian province of Québec faces several issues regarding the accessibility and quality of diagnostic assessment and the efficiency and continuity of evaluation, support, and intervention services for children with neurodevelopmental conditions (NDCs). To address these issues, the Ministry of Health and Social Services mandated a research team to initiate the development of a reference trajectory, i.e., a proposed model pathway based on national and international best practices and research, for the diagnostic assessment of NDCs in children aged 0–7 years.MethodsThe present study focused on the development of a logic model to operationalize the diagnostic services trajectory using a community-based participatory research approach and informed by implementation science. This involved representatives from multiple stakeholder groups (e.g., parents, professionals, physicians, administrators, researchers). Project steps included an analysis of best practices from a literature review on diagnostic trajectories, focus groups and interviews with stakeholders, and a validation process to ensure the appropriateness of the final model.ResultsThe integration of existing research and stakeholder input resulted in a logic model for a new diagnostic services trajectory for children aged 0–7 years suspected of NDCs and identified key ingredients that should be present in its future implementation.ConclusionThe proposed model for a diagnostic services trajectory is expected to address several systemic issues identified previously. Its implementation will need to be evaluated to ensure its sustained focus on the needs of families and its ability to promote their quality of life, well-being, and involvement.